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  • Glenn Hearson

Study in patients with Rare Cystic Lung Diseases to improve care through clinically relevant research (ORCyD) funded by NIHR Nottingham BRC

We will shortly be commencing a new study funded by the NIHR Nottingham Biomedical Research Centre.

An Observational Study in patients with Rare Cystic Lung Diseases to improve care through clinically relevant research (ORCyD)
 Professor Simon Johnson from the University of Nottingham, theme lead of the Respiratory theme of NIHR Nottingham BRC and Director of the UK centres for Lymphangioleiomyomatosis (LAM)
Professor Simon Johnson from the University of Nottingham, theme lead of the Respiratory theme of NIHR Nottingham BRC and Director of the UK centres for Lymphangioleiomyomatosis (LAM)

Led by Professor Simon Johnson from the University of Nottingham, theme lead of the Respiratory theme of NIHR Nottingham BRC and Director of the UK centres for Lymphangioleiomyomatosis (LAM), the study will recruit patients as part of their routine clinical care and their subsequent clinical care visits for up to 5 years.














Purpose of the study

Rare Cystic Lung Diseases (RCLD) are a group of rare conditions such as lymphangioleiomyomatosis (LAM), Langerhans Cell Histiocytosis (LCH), Lymphocytic Interstitial Pneumonia (LIP), Birt-Hogg-Dubé syndrome (BHD), and others. Like most people affected by rare diseases, individuals with RCLD face common issues including diagnostic delays, high healthcare needs and the feeling of isolation that comes with a rare diagnosis. This is difficult for patients, leading to anxiety and uncertainty over their disease course and only supportive care available at best.

 

The purpose of this study is to observe specific ‘cohorts’ or groups of patients over a period of time with RCLD and collect clinical data and bio-samples (a sample of biological material e.g. blood), to help us understand how these diseases behave in patients with similar characteristics, prognosis or therapy needs.

 

We hope that the knowledge we gain from this study will ultimately improve the care of patients with RCLD by providing better management and prognostic information.  

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